Category Archives: Disability

DWP: Disabled Writer, Persecuted.

12 Thursday May 2016

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I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.

It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.

Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)

And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.

One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.

The Problem With Money Policing

05 Tuesday Apr 2016

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When I deactivated my Ask.fm account over a year ago, in the face of multiple unpleasant messages (messages! not even questions!), I had naively assumed that the anonymous abuse would stop. I guess I forgot I had a blog.
There was the usual stuff about being fat, ugly, faking my disability yada yada, but in the blog comments there is also something quite specific to people who rely on state support to get by: money policing.

People who claim benefits are frequently subjected to scrutiny from the general public about where “their” (the taxpayer’s) money is going. Just look at comments on certain newspaper websites (or don’t, please don’t): any article about a family on benefits will have reams of comments underneath policing all aspects of their life from the flatscreen television to what they got their kids for Christmas, or their new-looking trainers, and whether the parents smoke or not. No one seems to point out that it’s more than a little difficult to get a cathode ray TV these days (never mind the fact that there’s no analog network any more), or that  these “luxury” items are often purchased on credit, or with the help of an unscrupulous doorstep loan company.  It’s not proof that benefits are too generous, it’s proof that even families in poverty want their kids to be happy on Christmas morning despite the cost, or to have the same as their more well-off peers. And the smoking? This seems to propel the commenters into an authoritarian frenzy; pre-paid “benefits cards” are a popular suggestion, redeemable only at supermarkets for “worthy” goods. Can you even imagine the exploitation possible here? Will one lucky supermarket chain will be chosen for the DWP’s partnership? What happens if a claimant is vegan, or coeliac, or doesn’t live near a supermarket, or is disabled and relies on home delivery (because I bet they wouldn’t let you use them on Ocado)? Not to mention the other things that people need aside from food: clothes, replacing broken appliances, kids’ toys….are tampons too much of a luxury? What about medicine? The bus fare TO the supermarket?

This brings us back to the problem of the public deciding what is a “worthy” use of “their” money. A cheque sent by my gran when I went away to university specifically had “not for raves” written on the back, but benefits aren’t a benevolent gift, they’re a payment that doesn’t depend on kindness but on eligibility. Once that money is paid, it belongs to the person who holds it in their account. But that doesn’t seem to stop members of the public weighing in what should and should not be done with it.
My luxury purchase (bought entirely with “taxpayers’ money”) will be a powerchair. A brand new powerchair because it’s the only one that will fit into the flat without removing the door-frame (and I’m definitely not allowed to do that). I had most of the money from a benefits backpayment but I needed help to raise the last quarter, so I set up a GoFundMe page (now closed, I met my target within 2 weeks).
It’s then that I realised someone was either on my Twitter or Facebook scrutinising it for things to complain at me about.

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Despite the accusation, I know I am not in poverty – not any more. Before January I was living well below the poverty line and had been for almost 2 years. Before I was approved for a travel concession I would exacerbate my condition by walking instead of taking the bus, so I could afford food. My own mother kicked me out because I couldn’t afford the tiny amount of rent she charged me (maybe I should have skipped the food?). I am well aware of how lucky I am to have a stable financial situation now, but the commenter seems to be shaming me for spending the money I now have.
It feels very strange to have to point out that seeing “The Manics” (twice) is costing me under 1/100th of the amount I put aside for the powerchair. That is an amount of money I can afford. I couldn’t (and still can’t) afford the target I set on the fundraiser within the time that I need the chair by. I don’t get how that’s hard to understand.
The more I catch myself justifying my spending the more I get angry with both myself for feeling like I NEED to justify it to the anonymous arseholes, and with the scrutiny that benefit claimants get over their spending in general.
Or even their future plans:

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(no I’m not writing my own abusive comments – they just seem to lack imagination)

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Heaven forbid I leave my flat and go out further than the nearest coffee shop, right? Oh, what? Coffee’s a luxury?
THIS is the problem with money policing. It starts with “no frivolities” and ends with “the bare essentials only”. Benefits don’t work that way. The DWP doesn’t calculate the bare minimum each individual needs to survive and award them not a penny more (though you could be forgiven for thinking that’s how it works). I realise I’m pretty lucky for someone in my situation. I’m not being charged for household bills, which means I have extra spending money (though I’ll happily forgo this in order to live somewhere actually accessible). I also have a part-time job under the permitted work scheme which the commenter doesn’t seem to have noticed me “regularly posting” about (which I do post about, because man I love grammar).They also haven’t noticed that before my benefits came in, after 18 months of waiting then the stress of an appeal, I didn’t do many of these things unless it was through my partners’ or friends’ generosity. Now I do have the benefits, I’m being policed over how I spend the money I am entitled to. I can’t win. This blog post might as well be called “The Pointlessness of Justifying Yourself to People”, and I might as well end by  saying, loudly:

What I spend my money on is my business and no one else’s. People who aren’t on benefits don’t have to put up with this money policing crap and neither should we. 

 

Malevolent Incompetence: a short post about the DWP.

24 Tuesday Nov 2015

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“It’s not enough that they’re cruel, they’re also incompetent with it and that makes it so much worse.”

My ex said that about the DWP sometime last year. I can’t remember over what, which is a worrying sign of how often they cause their victims stress and upset.
I’m still in pre-appeal limbo as far as PIP is concerned (occasionally sending them new and relevant letters from docs/specialists). But now my WCA has come up, and I’m having to try and deal with both benefits being “tested” at once.

My Work Capability Assessment was scheduled for the afternoon of the 11th of November. This didn’t happen. As soon as I got the letter with the date of my assessment, I called to request transport as it would be just too sensible for the assessment centre to be near an accessible station. I was told I needed a doctor’s letter for this. Fine. It took about a week and a half to secure an appointment, get the letter written up, and have it faxed over to the DWP, and then I called to see if it had been received. It had, but then I was told for the first time “We need three weeks to process it”. BUT I ONLY RECEIVED THE LETTER THREE WEEKS BEFORE THE APPOINTMENT DATE! They said they’d try to prioritise it, but the day before my assessment I was told that “it still hasn’t been checked by a medical professional”. That’s right, it requires a “medical professional” to read a letter stating that I can’t walk safely right now and can’t use stations without level access therefore can I please have a taxi to the assessment. My appointment was cancelled with authority, and I spent the day of the 11th a mess, full of anxiety and adrenaline built up for nothing, with no outlet, panicking that my new WCA and PIP appeal would be on the same day and both would therefore be cancelled. (DWP stress does interesting things to anxiety disorders.)

The DWP employee on the phone had been uncharacteristically reassuring, promising to phone me back personally when he heard any news of my rescheduled appointment. Any reassurance quickly dissipated from my mood when I got a form two swift and efficient days after my assessment should have been (how come they’re always quick with the bad things and not the things we need?). The form had questions (here paraphrased but not exaggerated): 1. Why didn’t you attend the assessment we had prearranged either by letter or by phone with you? 2. Why did you not let us know you could not attend your assessment as soon as you found out that you could not go?
The accusatory tone of the questions sent me into a spin. I felt like even though I could write “My assessment was cancelled by someone in your office on 10/11 because appropriate transport  could not be arranged in time”, the wording still made it sound like it was my fault, and as one of thousands of claimants flailing around in the huge system designed to fuck them over, why would they believe me? Anxiety through the roof.
That afternoon I got a phone call from Frank, the kind DWP employee. As promised, he had called to check up on me and update me on the situation. I told him about the form, and he told me it was an automated letter, in this case an error and not to send it back. Okay then, I had a minor meltdown over nothing.  Also would I like a normal taxi, or a wheelchair accessible one?

Another few days passed and Frank called again to tell me that I would have to be seen at Marylebone, not Neasden. But doesn’t Neasden have a lift? “Yes, but it’s policy that wheelchair users have to be seen on the ground floor.” Ah, so I’m guessing there’s a lift at Neasden, but no safety plan should wheelchair users need to be evacuated.

And now I have another WCA date. December 14th. I’m calling on the 7th to make sure there’s transport in place, and I’m calling Frank directly if not.

(Postscript: They forgot to send the taxi, any taxi. When a last minute taxi did arrive, it wasn’t a wheelchair accessible one either. Depressingly predictable.)

A Tale of Two Indignities

20 Sunday Sep 2015

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The first time my boyfriend came to my flat, I had to ask him to help me in the bath. He’d not had so much as a risqué picture message from me before, but here I was stark naked, with him gently manhandling my wonky body into the foamy water. He sat politely out of sight while I washed. Asking a new partner to help with something so intimate was daunting for the few minutes I deliberated over it, but when he turned up at the last minute in a bid to turn my bad week around with a night of films and food, and I realised I hadn’t washed in 3 days, I didn’t have much choice. In retrospect I think he might have been more anxious than I was.

It’s a funny story to tell on the surface: date turns up, girl demands bath. It’s less funny when you dig a little deeper. Since a major worsening of symptoms in December, I can’t bathe without at least having someone in the flat listening carefully, as I’m liable to faint in the bath, and I need help getting in and out on my worse pain days.  As I’ve previously written about, I am still trying to access Personal Independence Payments so there is just no money spare to pay for home care. I’m in contact with social services, but I’m still waiting for another meeting with my occupational therapist who seems to be my contact for all things useful.

This leaves me to rely on friends for now and it doesn’t feel fair on either party. But really, what choice is there? The choice between the indignity of being naked in front of someone who’s probably just as embarrassed by the situation – and throw in some body confidence issues too for good measure – or the indignity of not washing for several days. It’s the latter I’ve been doing lately, knowing that the next time my boyfriend comes over will only be a few days away. Dry shampoo and sink washes. There is no right answer, though. I worry that one day my brain will notice that I smell bad, that I’m wearing pyjamas in the afternoon, I’m not even trying to tidy my hair, and it will deduce that I must be depressed and then act accordingly. I worry even more now I’m having psychiatric appointments again, that unwashed hair and overcompensating body spray will by noted down as clinically significant (after all, my facial piercings were once used as a diagnostic tool, however [in]accurate).

I need to swallow my anxiety on this, and jump in. I’ve done it before years ago, in hospital. Evading being watched while washing on close observation order by having a bath with half a bottle of Matey poured in to protect my modesty. Maybe bubble-bath is the way ahead.

Zero Points – the PIP nightmare continues

28 Tuesday Apr 2015

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Zero points. When I first read the decision letter, I honestly laughed. Then I tried not to cry, and now I’m stuck in righteous anger mode (so apologies if this post is somewhat disjointed). But anger makes me productive, motivated.
Let me tell you how I got here….

It took me weeks to get my PIP assessment sorted from the time I was first offered one in March (after applying in August 2014). Initially they sent me an appointment for 8am – in Chelmsford. Since I’m in North London, this would have required me to get up at 4am to ensure I could take medication, get dressed, and leave the house in time to get the nightbus to the station for the first train. It wasn’t going to happen. I was allowed to rearrange the appointment for a more local centre, but missed it by 15 minutes – a broken lift at the “accessible” nearby tube station and a hellishly long walk to the assessment centre after already having done the station stairs on a bad pain day conspired against me. In the end I had to get Atos involved on my behalf when the DWP cancelled my claim, as Atos had promised me when I called them in tears from the assessment centre that they would send me another appointment. You’re only meant to be allowed one rearrangement, you see, and moving an appointment from another city entirely to one it takes under 4 hours to get to is counted as such.

The assessment, when I finally had it, left me feeling cautiously optimistic. The assessor was a nurse who’d specialised in chronic pain and had actually heard of Ehlers-Danlos Syndrome. He said he wouldn’t put me through the physical examination because he knew how painful the condition was.
Reading the decision letter over I can see now why there was caution in that mood:

“You said that you have difficulties with preparing food, taking nutrition, therapy or monitoring a health condition, washing and bathing, dressing and undressing, communicating verbally and engaging with others face to face. I have decided you can manage these activities unaided.“
It’s just a bit of a kick in the teeth isn’t it? I sat facing the assessor and told him that I’d managed to have a grand total of one bath and one shower completely unsupervised since January, meaning I often go for most of the week without a proper wash (ask me about that time I had to have my new bf to supervise me in the bath before we’d even seen each other naked!), and that I can only cook if someone is there to make sure I don’t fall (not to mention the issues carrying pans, chopping veg, opening jars etc). If I can’t get up on bad days, then I can’t get food, therefore I can’t take my medication. As for getting dressed? My partners learn quickly how to put tights on misbehaving legs. If I’m not leaving the house I just DON’T get dressed. It saves pain and energy.
“I have decided you can stand and then move more than 200 metres”
This was written without actually seeing me walk further than the short distance to the assessment room, on crutches, in pain. That is how I walk: in pain. He didn’t even want to see the letters I brought with me from the GP. Somehow I thought that was a positive thing.

So the next step is to ask for a Mandatory Reconsideration, and call a local disability service for more advice. I’ve checked with a few disability activists I know, and apparently being awarded Zero Points is fairly common – a tactic they use to discourage appeal (after all, it’s not even CLOSE to the minimum number of points needed for any award). It just disgusts me that they do this. I’m angry, and anger makes me want to fight it. Many other people in my situation may get depressed, disconsolate, feel helpless and abandoned. They do not fight. I’m angry for them. This system is incredibly broken if it thinks that only those who are strong enough to fight the decision made against them “deserve” help.

Silent stares and rude questions: the disability minefield.

15 Wednesday Apr 2015

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We need to talk about something faced by disabled people every day: the attitudes of strangers. Not remarks, not discrimination, but the silent stares.

There’s no question that everyone gets judged on their appearance by those they pass in the streets. Something that makes you stand out will attract attention be it crutches or a strange hairstyle. I’ve been there pre-disability: bright obnoxious pink white and orange woollen dreadlocks paired with multiple facial piercings. Then I revelled in the stares (two fingers up to society? oh teenage me), but now when people look at me struggling to walk with crutches, hiding behind nothing, it feels like the stares are piercing my skin. I attract attention for the “wrong” reasons, those beyond my control, yet I feel no pride in my appearance now. There’s nothing worse than passing a chattering group of friends on the tube platform, for them to go silent, watch me pass, then start up again in hushed tones once I’m out of earshot.

On a Facebook-based support group the other day, I saw a woman ask why so many of us posting have negative or angry responses to strangers asking questions about our crutches or wheelchairs. She suggested that we should embrace the questions, and use it as a chance to educate people about a debilitating and under-diagnosed condition. This met with a mixed response from the rest of the group, and sowed the seeds of this post in my mind.
Ideally, if a stranger approached me and asked me “Excuse me, do you mind me asking why you walk with crutches?” I would give them a polite, concise but informative answer. But that is of course just hypothetical –  they DON’T tend to ask that question. I get “What’s wrong with your leg/legs?”/ “What happened to you?”/ “Aren’t you too young to be disabled?”. None of these require acknowledgement, let alone dignifying them with a response (although I did once end up getting a major charity’s entire street-fundraising team retrained in their appropriate opening gambits, of which “Woah, what’s up with your legs?” is NOT one).

And if the hypothetical polite and considerate question is asked? I am probably not in any mood to answer it. And here’s why:
I call it the Triangle Of Doubt. I experience it almost every time I go out. Their eyes go first to my crutches (disabled!), then my face (young!) then my legs (not broken!) and around again, the frown becoming deeper. Something doesn’t add up there. They try to work out which bit is wrong. Too young to be disabled? Faking? Fashion accessory? Benefits cheat? Should she be out alone?
What this mostly amounts to is I get frowned at by strangers who’ve been staring at my legs. And it adds up. I end up trying to avoid eye contact.
So, usually by the time someone comes up and asks me a polite question about disability, I have had x-number of the above microaggressions and my patience has run out.

Generally I really dislike being asked about disability when I’m out in public by complete strangers who only want to satisfy their own curiosities*, but I’m happy to educate people about Ehlers-Danlos syndrome and chronic pain over the internet, but in my own time and when I’m able to, but this is the key point: you cannot demand personal information from people and expect to be given all you want then and there. Disabled people may be dealing with chronic pain, exhaustion, and the effects of strangers’ attitudes and even politely asking could be upsetting or met with a snappy response. Consider this next time you feel entitled to approach a stranger for details of their life. Although you might be lucky and get one of the small percentage who don’t pick up on the microaggressions.

And, for the record, the correct response to “What’s wrong with your legs?” is “What’s wrong with your manners?”.

*exemption given to medical professionals because EDS is really undertaught and we often have to be our own experts and teach our own doctors!

The “privilege” of disability.

09 Tuesday Dec 2014

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(Bear with me for the vaguely disjointed writing style. Brain kittens are extra active today and it’s been difficult to keep a train of thought.)

With two recent headlines about disabled access to public services, the audit of shop accessibility and the wheelchair space on buses case, there has been a lot of talk recently in non-disabled spaces about the rights of disabled people (and what they should or shouldn’t complain about or campaign for).

On a discussion on a friend’s Facebook page where they posted up the latter story, a non-disabled person commented with something along the lines of “disabled people have privilege because there are special measures made for them” (not exact wording because my friend got upset and deleted the whole post before I could copy it).
I would argue that there is a privilege structure within the model of disability itself, but that disabled people as a section of society do not have privilege. Having special measures put in place, such as ramps to shops and a reserved area on the bus for wheelchairs is not a privilege but a means to access the same public services as the majority of the population. It’s not a privilege to have laws protecting you from being discriminated against; it’s a sad fact that these laws don’t seem to stop disabled people from being on the receiving end of abuse and anger from others anyway.

Disabled people are a protected minority and this affords us the privilege of being shat on from all sides. The government cut our services to save money instead of increasing taxation (only one hearing aid for bilaterally deaf people, cuts to local travel passes, social services care hours cut…), but try to focus the disenfranchised rage of the working class masses onto the disabled population by scaremongering about the amount of fraudulent disability benefit claims (as opposed to, I don’t know… MPs’ expenses?). In turn, disabled people are viewed as “scroungers”, “spongers”, a “drain on resources” by the rest of the struggling population. And if you are disabled and CAN work? Why are you even claiming any extra money at all then? If YOU can work (as a disabled person) then why can’t every other disabled person?
The link to the BBC news site’s article about the recent bus rulings is at the start of this ramble. I read the comments (never read the comments). Here are some (unpalatable) gems:

“If disabled people can do olympics they can wait for next bus. A child should always come first !”
– ah, the legacy of the Paralympics continues to haunt those of us with disabilities who are not also athletes (I believe that’s most of us)

“Whilst sympathising greatly with wheel chair users where will it end?”
– aka “i’m all for equal rights but they’re getting a bit too noisy about it now”

“Can’t they just use their mobility payments to use cabs?”
– not entirely sure this person realises that mobility DLA/PIP component is not really enough for an on-call chauffeur

Then there’s the usual slew of “but they get free cars” (I don’t think you understand how the Motability scheme works), “they wanted equality, this is equality” (no, it’s not. not when a non-disabled person could have gotten onto the bus and sat down – equality isn’t about everyone being treated exactly the same, it’s about giving marginalised groups the tools they need to achieve equality), “loads of people who use mobility scooters aren’t disabled just obese” (cause and effect mix-up here – when you can’t exercise due to disability or illness you do tend to put on weight).
And my favourites: “confined to a wheelchair”, “wheelchair-bound”, “stuck in a chair all day” *screams* that’s for a rantier post about disability binary that many people have already written much more effectively than I ever could.

But despite the “privilege” of having complete strangers being able to judge us on just about any aspect of our lives, from “helpful” dietary advice (no it will not make one iota of difference to my shonky collagen if I went gluten free) to whether we are REALLY disabled or not based on their extensive medical training and knowledge (which seems to trump any actual specialist opinion), we are a protected minority – like a flock of rare bats nesting in a crumbling old church that the council really wants to demolish but can’t because BAT PRIVILEGE.

And now I’m stuck on the bat simile and can’t write sensibly any more.

-abrupt finish-